BPSU new data collection platform

The BPSU office is working with the University of Dundee Health Informatics Centre to develop a new data collection platform to collect data on rare diseases, making it easier for clinicians registered on the BPSU reporting scheme to report cases and complete their clinical questionnaires.

This platform launched 4 April 2022 with the March reporting card. This page has information on the pilot study and FAQs.

Pilot study - neonatal stroke

Surveillance of neonatal stroke commenced in April 2022 and will run to May 2023 (13 months of surveillance) with follow up until May 2025. The study is led by the neonatal research team at the University of Nottingham headed by Dr T’ng Chang Kwok and Professor Don Sharkey.

The study will inform us of the impact of neonatal stroke to better allocate resources. This study will describe the associated factors, management and outcomes following neonatal stroke. Neuroimages will also be collected as part of the study which will help with understanding the condition and its diagnosis. By exploring how babies with stroke present and are cared for, future studies looking at prevention and new treatment options can be better designed.

The study is funded by the 2019 Sir Peter Tizard bursary and supported by Bliss, the national charity for babies born preterm or sick.

You can find further information about the study, including the protocol card.

Platform walkthrough

The below video discusses the following at the specified time points:

00:00 Notice
00:07 Setting up your account on the new platform
01:17 Responding to the eReporting card: submitting your response, entering case details and completing clincial questionnaires
04:44 Uploading images to clinical questionnaires
05:48 Returned questionnaires

Frequently asked questions

Find below some answers to questions that may arise when you use the new data collection platform. To receive the latest updates follow BPSU on Twitter at @BPSUtweet.

How long will we be required to report to two systems?

We aim to pilot the Neonatal stroke study for some time before moving all studies to the new system. While we pilot the platform, we may add additional studies to the new system. You will be notified when the old platform is no longer being used to collect data.

How do I enter my cases through email to the e-reporting card?

Before the 1st of every month you will be sent an email to either report cases you had seen in the past month or to indicate you have nothing to report. Every week you will be also sent a reminder if you are yet to respond to the current card. You may use the link to reminder emails to also report cases to the current reporting card.

To indicate you had seen a case you click the green ‘BPSU Case Reporting Card’ button which will take you to the reporting screen where you can indicate which cases you had seen. You must press submit in order for your responses to be logged.

You can also login to the site directly and report your cases from your dashboard by clicking the relevant card.

Which email you open will correspond with the card you will report to. If you open a January 2022 reporting card email you will be taken to the January 2022 reporting card likewise if you open an older card email you will be taken to an older card not the current one. If you wish to access other cards you may also login to your dashboard and report to your cards there.

How do I report no cases seen through the new site?

To indicate you have nothing to report you click the red ‘Nothing to report’ button. Your response will be automatically logged. You can also click the ‘No cases button’ next to the cards on your dashboard.

How do I report a case through the dashboard?

After logging into your dashboard, you will find all the cards sent to you under the ‘Card responses’ section. You can click on the month which you have a case for, and you will be taken to the reporting screen.

I am not able to login. What can I do?

If you are not able to login you must click the forgotten password button on the login screen. You will be sent a password reset email. If you are still unable to login after resetting your password please contact bpsu@rcpch.ac.uk

Why can’t I see my questionnaires after I submit a case?

We suggest setting a memorable case ID when taken to the case details form after submitting a case. The ID will help you locate a questionnaire if you are not able to see it amongst all your questionnaires. If you are not able to see your questionnaires even after the case details form, please contact the BPSU office with your BPSU ID.

How do I know which questionnaire is linked to which case?

There are two ways to know which questionnaire is linked to what case. The first is the case reference which has two initials and six numbers for example ST-2111-22.

Noting this down prior to going to the questionnaire help you find the questionnaire as the case reference is also on this page. Another way to find your questionnaire is by adding a unique code in the case details form. This can only be seen by you and can help you locate your cases quicker on the questionnaire screen.

Do I have to complete the questionnaire in one go?

You do not have to complete the questionnaire in one sitting. You may save your progress by using the save button at the bottom of the screen.

Clicking the ‘Questionnaires’ button on your dashboard will show you all your questionnaires. To finish your questionnaire, find the right questionnaire that has the ‘In progress’ wording beside it, select and continue to edit.

I already recorded a response to a reporting card. How can I add another case?

If you have another case to report to a card you have responded to in the past you may go back to the original email that was sent to you. You must remember the email you access dictates which card you go on to.

You may also login to the platform and scroll down on your dashboard the previous cards section. Here you can use the drop down to select the card you wish to report to, and you will be taken to the reporting screen of that card.

I encountered a problem while using the site. What should I do?

If you encounter any problem on the site please email the BPSU office at bpsu@rcpch.ac.uk with your problem in the title.

Please give us context to the problem you are experiencing. Let the office know what you were doing prior to the error and during it. Attaching screenshots can also be helpful.

I want to change my hospital details. How can I do this?

Please login to your clinician dashboard. There you will find the option to update your details. Alternatively, you may email bpsu@rcpch.ac.uk with your request.

I want to be taken off the BPSU reporting card. How do I do this?

Please email bpsu@rcpch.ac.uk and request to be taken off the reporting scheme.